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Saturday, February 14, 2015

As a child, I rather dreaded this day as would have to
laboriously write 30 names of my fellow students on their cards.I did however cherish the cards I
received in return and still have some from 1983 in my memory box.Cards can make you feel so very
wanted and loved.

As I worked this year with my son Isaac on his Valentine’s
cards for his third grade classmates, we discussed the many ways he could show
his friends that he cared for them.We also began a rather deep conversation about subtext.We talked about the facing message that
is obvious in a card but there is often a deeper subtle message underneath.

In February of 2013, I began a campaign on Change.org and on Twitter to
encourage Hallmark to have a line of hospice cards.The idea came out of a tweet chat that TedMed hosted that
year. Major media sites
reported the campaign that spring.Hallmark did consider my proposal and made their search engine a bit
more user friendly for families looking for cards appropriate for hospice, but
they did not create a hospice card.A competitor, Greeting Card Universe, ended up making 24 different types
of hospice cards in the spring of 2013.

When I attended HIMSS in Louisiana
in March 2013, I brought materials to begin creating
a large hospice card prototype for Hallmark. So many people who attended the Patient Engagement Track
signed the inset that would accompany the card.

When The Walking Gallery gathered on June 2, 2013 in Washington, DC attendees from all over the nation signed the card insert we planed to give to Hallmark.

When I spoke at
KUMC in Kansas City, Kansas in September 2013, I brought the card elements with
me.With help from the amazing
folks at KUMC we assembled the card right there in Kansas only miles away from
Hallmark Headquarters.

My dear friend Jari Holland Buck, Walking Gallery Member and patient advocate took the
over-sized card to the Hallmark Headquarters in September 2014.We had tried to arrange an official
hand-off in 2013 but were unsuccessful.

At approximately 11:30 am Central time, September 5, 2014, Jari delivered
the hospice card we assembled at KU Medical Center. Jari did try to find the
“right” person to accept delivery of the card to no avail.She hoped a spontaneous visit would net
results.

Prior to arriving,
Jari verified that they still lacked an identified presence in the hospice
cards. Their website stated the following, "These cards are available within several
different lines in any store that carries Hallmark products. But because
they haven't typically been displayed together, and because not every
store offering Hallmark products carries every card we produce, these cards can
be difficult to find. Late last year we began offering new displays to group
these cards in a "tough times" zone with signs to help shoppers find
them. These new sections will be appearing in manyHallmark Gold Crown stores
throughout 2013."

The front desk security guard asked Jari to leave the card
as she was making an “unscheduled delivery.” Jari refused, saying that there
was too much pain and too many people behind this gesture to simply pass this
work to Hallmark anonymously.

Jari suggested
several possible recipients to the security guard. The security guard responded
that she didn’t have the names or roles of department employees. Jari suggested
that Media Relations might be a good direction.

“My name is Jari Holland Buck. I am a Patient Advocate and member of
Regina Holliday’s Walking Gallery. I am here today on behalf of all hospice
patients, past, present and future, as well as the family members who care
about and the caregivers who care for them. Facing death is one of the most
difficult challenges any of us will face, whether it is ours or that of someone
else.

Hallmark has helped us with our inability to express the right message
and continues to do so by offering cards that are “appropriate” for those in
hospice. When I walk into a Hallmark store to purchase a hospice card, this is
not a fun trip. I do not wish to search through the racks or be escorted by an
employee who may or may not know where to source the appropriate card on the
racks. This is hard enough for me to acknowledge and I just want to get in and
get out.Hallmark has neither
clustered these cards in a meaningful way in the stores nor offered a line
specifically dedicated to this painful experience.

On behalf of Regina Holliday, members of the Patient Advocacy Walking
Gallery, our local community and caregivers throughout the US, please accept
“our” card asking you to dedicate your time and attention to this issue.”

Ms. Odell responded that she was working on correspondence
with www.caringbridge.org/ for a co-branded
line of cards.She was working on
this at the very moment she was contacted by the security guard and thought the
timing was fortuitous. Jari asked if Ms. Odell if she was aware of my petition and
she said, “Yes. Regina was the one who initiated the change.org petition for
hospice cards.”

Ms. Odell stated that hospice cards were still not grouped within
Hallmark stores and was aware that there had been “issues” with shelf talkers /
inserts that identified their presence within the racks.

Jari told Ms. Odell that she was serving as an advocate for a hospice
patient. Jari knew, from personal experience, what it was like to visit a
Hallmark store seeking these cards. Jari explained how awkward many of her client’s
friends and family members felt expressing themselves to the dying patient.

Ms. Odell acknowledged that the point “This is not a happy trip to the
card store and I am not here to shop or laugh,” was a valid one and one
not previously considered to her knowledge.

She also said she knew 15 people who needed to see the card. They were
spread widely throughout the organization. Ms. Odell then asked for a copy of
Jari’s explanation of the card, which Jari willingly provided.

Today is Valentine’s Day and Jari sent me a card.I don’t get many cards on Valentines
day and I thank Jari for being such a great friend. Her card encouraged me to write this post today and report on
the Hospice Card saga of the past 2 years.

Which encouraged me to think about subtext.

I realized that I began demanding cards for our loved ones who are
dying in February the month of Valentine’s Day.

I am a Widow. This is a hard month for me.My thoughts turn to love and loss.My request to Hallmark is that same as it
was two years ago.Help make a
time that is so very sad be filled with love.I don’t want a memory box just filled with Valentines.I want to see some hospice cards.

So I write this post today and will tag it with #HealthPolicyValentines.

Be the change you wish to see. Never forget you can change health policy with a simple greeting card.

Saturday, February 7, 2015

This is February.In a few days from now thousands of people will flock to New York for
Toy Fair 2015.These are the
people who spend their year focused on the wants and needs of children.There will be the store buyers who will
look for new the toys that will make a child squeal with glee.The manufacturers and the designers
will listen closely to the buyers and think of the ways they will redesign in
2016.Marketers will spend
countless hours focused on informing Mommy bloggers about all the wonderful
items that will educate and inspire the future generation.In the bright and whirling cacophony of
commerce, design and creation everyone will focus on the child.

While all of this transpires, I will take off my artist
smock and for day go back to Barstons Child’s Play, the store I have worked in
for over 16 years.I will be a
clerk again.I will focus on
children and joy.I will help
parents make the best choices for their little ones.I will fly away from the sickness and sorrow that informs so
much of my work, and I will be the one who helps a child.

Then March will come.Thousands of people will flock to Austin, Texas for SXSW2015 (South by
Southwest).These are the
people that spend their year focused on film, music and cutting edge
technology.There will be the
storeowners looking for an edgy sound or the newest digital design.There will be the venture capitalists
and angel investors looking for the hot new medical device or mobile tech concept.There will be marketers and
entertainment bloggers looking for the hottest new act.In this pulsing musical clamor of the
arts and tech combined, very few people will focus on the child.

Here they will focus on the child and for them I created the
painting “Flying”

I took their logo, a spiraling series of foreshortened dots
and turned them into shields.Behind the shields pediatric patients are flying like superheroes.

In the far distance three children fly with symbols of a
teardrop for mental anguish, a question for innovation and gears for power of
industry.

Closer in a child flies with an exclamation point shield
representing patient safety, another child has the symbol of a die for
gamification and closer yet a child flies with the symbol of a ribbon that represents all disease.

Along the top of the spiral a girl holds a shield with the
medical cross representing institutional medicine.To her right a toddler boy holds a shield emblazoned with
the universal symbol for the infant and it represents prematurity.To his right a girl proudly bears a
shield with a double helix for the potential of applied genomics.

At the bottom of the spiral and closet to the viewer are the
last two children.A boy holds a
shield with the pound symbol, the hashtag, representing all things social
media. To his left a determined girl flies toward the viewer and upon her
shield is the wifi symbol representing the power of interactive tech to spread
a culture of health.

On Monday March 16, the finalists will present their
interactive concepts that could help pediatric populations. I hope this
painting will inspire them.I am
glad that Brian Lang from Impact Pediatric asked for my help on this project. I
am so very happy to return to my first passion and once again help a child.

The Walking Gallery Mini Doc

About Me

Regina Holliday is a resident of Grantsville, Maryland. She serves on the board of the local non-profit The Highland Thrift Shop. She is a member of the Grantsville Rotary Club. She is also Asst. Cubmaster of Pack 460 Cub Scouts.

In addition, Regina serves as a parent advisor to the Garrett County School Board Health Advisory Committee. She is also a member of the Garrett County Chamber of Commerce and The Garrett County Arts Council.

Ms. Holliday is an activist, artist, speaker and author. You might see her at a health conference painting the content she hears from the patient view. She is part the movement known as participatory medicine. She and others in this movement believe that the patient is a partner with their provider and both should work together as a team.

Regina is a mother and a widow; she speaks about the benefits of health information technology and timely data access for patients due to her family loss. In 2009, she painted a series of murals depicting the need for clarity and transparency in medical records. This advocacy mission was inspired by her late husband Frederick Allen Holliday II and his struggle to get appropriate care during 11 weeks of continuous hospitalization at 5 facilities. Her paintings became part of the national debate on health care reform and helped guide public policy.

She also began an advocacy movement called “The Walking Gallery.” The Gallery consists of medical providers and advocates who wear patient story paintings on the backs of business suits. Paint and patients, pills and policy all come together within The Walking Gallery of Healthcare. This "walking wall" of 330+ individuals who wear personal patient narrative paintings on their backs is changing minds and opening hearts. They are attending medical conferences where often there isn’t a patient speaker on the dais or in the audience. They are providing a patient voice, and by doing so, are changing the conversation.

She published a book with the Health Informatics Society of Australia (HISA) entitled: "The Walking Wall: 73 Cents to the Walking Gallery."